Can the UK change attitudes towards organ donation?
As figures show grieving families have vetoed organ donations by deceased loved ones, the UK adopts a new approach.
Seven-year-old Fraser Bates has already saved at least four lives and helped two other people to see again, thanks to a decision taken by his mum, Anna.
Last December, Fraser and his father Stuart were hit by a car. Both later died from their injuries.
Anna-Louise Bates took the decision to allow her husband and son to become organ donors. Since then, Fraser has given at least four people the chance to live.
“When the difficult decision came it was no decision at all,” she told Al Jazeera.
“I knew expressly what Stuey would have wanted me to do and Fraser was never ever treated as a child. He was very concerned following the Paris shootings and always wanted to give anything that he could to help anyone else. I knew that this is what he would have wanted too.
“I didn’t realise the effects of my decision and the importance of it until afterwards and the amount of comfort it has brought me and my family.
“To know Fraser has given the ultimate gift of life to at least four others and to know Stuey’s wishes were fulfilled is amazing.”
But not all families approach organ donation with the same attitude.
NHS Blood and Transplant (NHSBT), the body responsible for organ donations in the UK, recently released figures that show at least 547 families had vetoed donations by a loved one since 2010, despite the fact the relative was signed up to the organ donor registry.
For Anna-Louise, the fact that they had discussed organ donation as a family meant that she knew exactly what her husband would have wanted. She has now set up a charity to help others to have these conversations.
“Stuey and I were friends with Teddy Holsten’s mum, Jessica, who just won the Pride of Britain award, and it was following watching the show that we talked about organ donation generally.”
In 2015, Teddy Holsten became the UK’s youngest organ donor, after living for just 100 minutes.
“I’ll be honest, I wasn’t sure [about organ donation] but it was Stuey who saw the importance of it.
“I was not aware of these problems [with families preventing donations] until being part of the process,” Anna-Louise said.
“This is one of the objectives of the Believe charity, to look into this and to try and make the process easier for families.
“Stuey had opted in but I still had the power to overrule his decision, which I do not think is right.”
According to NHSBT, refusals by the family members of those who had opted to be donors have meant that an estimated 1,200 people missed out on potentially life-saving transplants.
There are currently more than 6,500 people in the UK waiting for a transplant.
NHSBT has responded to concerns about the shortfall in donations and the vetoing by families by changing the way in which donation is approached.
Instead of seeking consent from families in cases in which the potential donor has already signed up to the register, relatives will be given a leaflet explaining that consent rests with the deceased.
Families can still override this if they really want to, but they would need to provide reasons for their decision and discuss it with a specialist.
Anthony Clarkson, the assistant director of Organ Donation at NHSBT, told Al Jazeera that while they already had legal consent to go ahead with donations if the deceased had signed the registry, it was still important to support the families involved.
“Technically, in law, we have consent because they have consented in life,” he said.
“For some families, however, it might not be the right thing and of course we would respect that.”
In Scotland, relatives already have to fill out a form explaining why they are removing consent, and give evidence that the potential donor had changed his or her mind.
“We were considering whether to introduce that form elsewhere so that when a family has to sign that form it really makes them think, ‘Is this what we want to do?'” Clarkson said.
“The third measure is ensuring as many people as possible when they join the register tell their family.”
This last point, he added, would help to reduce the emotional strain on families having to make a decision about donation.
“The hope is that families who know that’s what the relative wanted to do will be in a very clear position and ready for the approach of an organ donation specialist. What we don’t want is for them to come to a decision and then regret it, particularly when the relative is on the register.”
For health advocate Sharon Brennan, who has cystic fibrosis, the idea that relatives can deny a deceased person’s final wish is troubling.
A life chance
In August 2013, the now 35-year-old health campaigner and writer received a phone call that changed her life.
She had been on the lung transplant registry for just five and a half months when she was told a viable match had been found – but even then she struggled to believe the operation would go ahead.
“I was convinced it wouldn’t go ahead because there are so many people I know that have waited for four, five, six, even seven calls, so to get it on your first is quite rare.”
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Sharon was so convinced that the procedure would not, ultimately, go ahead that she messaged friends she had been planning to meet at the weekend to tell them to still expect to see her.
“I’d had oxygen [needed because of her illness] delivered to their house and I was texting her right up to the last minute. She was replying saying I should probably be concentrating on my transplant.
“When I was ill and waiting it was very odd to think that … [I was] dying. Cystic fibrosis is a very unusual condition because you have it all your life and you struggle quite a lot, but that becomes normal.
“Although I knew I wasn’t going to have a very long life expectancy it is kind of weird to look back and realise I didn’t have long left because I was struggling to do anything.
“At the time when you’re living through that it is amazing how you can adapt your thinking to think, not that you’re OK, but that you’ve got time left.
“It was only after the transplant when I realised what it is to be healthy, that I realised how ill I was. I definitely wouldn’t be alive now without having had that transplant.”
A second chance
Beyond the huge impact it has on those waiting for transplants, Sharon also feels that refusing to allow donations affects the families of the deceased.
“How are they going to feel three months down the line, when that sudden grief has not dissipated but they’ve learned how to deal with it better, that they actually denied their loved one their last wish?” she asked.
“We talk a lot about people like me getting a second chance in life, but actually by saying no to what a donor wants to do, you’re taking away their chance to save someone.
“There’s already a big gap between people who believe in donation and actually act on it, so to have someone who signed up means it is obviously something they actually wanted to do and I don’t think anyone should have the right to take that away.
“I do think the families need emotional support through the process, but I don’t think they should be able to say no, unless they can genuinely say that the potential donor changed their mind.”
Support in difficult times
In the UK, only 34 percent of people have opted in to be organ donors, but more than 90 percent support the idea of donation.
This gap is one thing that prompted Wales to change its organ donation system to one of “presumed consent”.
This means that unless a person actively decides to opt out of donation, it is assumed that they have no strong objections to the procedure in the event of their death.
Dr Chris Jones, the deputy chief medical officer for Wales, told Al Jazeera that the country had run a two-year campaign to make sure people understood the change before it came into effect in December 2015.
“We have a duty of care to the families and it is very important that they understand their options. What deemed consent means is that they have a responsibility to provide evidence to prove they didn’t give their consent to be a donor,” he explained.
“Our hope is that it will lead to more organ donors as fewer families object to donation.”
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Although specific figures are not yet available for the true effect of deemed consent, Jones said that anecdotally there has already been an increase in people opting in.
He added that the work of the specialist nurses, who guide families through the donation process and offer support, was essential to the process.
Religious perspectives on donation
Shibu Chacko is one of 250 specialist nurses in the UK who work to support families through the organ donation process.
He told Al Jazeera that each day in the UK, at least three people die for want of a viable organ.
“Organ donation comes at a most traumatic of times for families – when a loved one dies. Talking about organ donation as part of the end of life care is very emotional for families and must be handled very sensitively by health professionals,” he said.
“We work with clinicians and hospital staff but we do also engage with local communities to help raise awareness and answer questions and address misunderstandings about organ donation.
“Some colleagues’ community work focuses specifically on working with minority faith and ethnic groups. We know there are several perceived barriers to donation often relating to beliefs, traditions and practices around death.
“All the major religions of the UK support the idea of organ donation and transplantation. However, many people are unsure what their religion’s views are on organ donation. We have produced guides in several languages about each religion’s perspective on donation.”
Chacko added that this kind of thing is essential as people from the same ethnic group are more likely to be a close match.
“Our research shows only around half of the population have discussed donation with their family, even when they have joined the NHS Organ Donor Register.
“We need conversations about organ donation to be part of everyone’s life. If you know you want to donate your organs after death, it makes it much easier for your family if you have the conversation in life.
“We need to revolutionise public attitudes towards donation so more patients get the organ transplant they desperately need.”
It is this cultural change that Anna-Louise Bates believes will make the decision-making process easier for grieving families.
“Knowing Stuey’s wishes made the decision simple and I would strongly recommend that people have this discussion,” she said. “The comfort that we have had is tremendous and without it I think that life going forward would be far more difficult.”